Houston we have a problem

March 2016

Let's talk about Houston.

Why did we go there?
Well if you don't already know, it is a medical mecca.  There are seriously brilliant minds there.  And we have amazingly kind family who live there who offered to help us to get in to see some of the top doctors in the area of neurology and neurosurgery there so we hopped on a plane and went.
Before going we had literally been told by doctors in Colorado...
"No further follow up was needed on the cyst in my brain, but we don't know what is going on and why you are having all the symptoms you are having, see yet another specialist."
"The migraines that have been going on for 30+ days...would go away on their own,"
"There was nothing that they could find that was wrong but something was certainly wrong with me, they just didn't know what and I was in the hands of specialists to try trial and error with drugs to see what would work."

When we went to Houston with the help of my Dad's cousin and his wonderful wife we were treated with such amazing kindness.  Every doctor that we saw there gave us so much valuable information.  They had a wealth of knowledge and each one pealed back another layer of my complex case.  We came home with so many new ideas and things to try.

But then trying to transfer that knowledge back to our doctors here has proven to be a ridiculous challenge.  I am incredibly grateful for the medical community and thankful for how hardworking and professional the individuals are within that community.  But like education there are aspects about the system which bog it down and slow down the rate at which a person is able to receive the care they need.  I am not going to continue to rant about this but it has been terribly frustrating during this process.

So we came back to Colorado and tried all of those wonderful things they told us to try and there we were 4 weeks later and...the echo results are in.

Turns out I have a PFO patent foramen ovale--or a hole in my heart.  Read below for more info.

http://www.heart.org/HEARTORG/Conditions/More/CardiovascularConditionsofChildhood/Patent-Foramen-Ovale-PFO_UCM_469590_Article.jsp#.VyK1QhMrI0Q


So what were our options...at this point I am still having daily migraines.  The drugs they have tried have now failed and I am trying yet another new treatment. I still can't drive or work.  I have dizziness, blurred vision, vertigo and migraines every day and a whole host of side effects from the medications.

So we could wait in Colorado for 2 months before we could be seen by the cardiologist.  Or fly back to Houston and be seen that week by some of the top cardiologists and neurologists and gastroenterologists in the field.

With heavy hearts we packed up our kiddos and left them with their amazing Grammy and Pops and flew back to Houston.  Hoping for answers, filled with questions, and anxious to get better.

The Purge

Gluten is the devil.
Not really, but yes, it makes me really ill.  Once we found this out we went from feeling like there was nothing we could do about our situation to at least having something we could focus on.  It isn's all of the answer to all of the puzzle pieces but it is putting a lot of the pieces together for us.  We immediately set out to start purging our kitchen of ALL things containing gluten and boy was there a lot of it.  It was a bit of a panic, knee jerk reaction but when you open the cabinet and have to read every label before being able to eat something it gets a little tiresome.  So we purged.  For someone (like me) with Celiac's even trace amounts of gluten in spices, tea, condiments, etc can make a person very sick.  So not only did I need to purge anything with gluten but also the jelly jar which had a knife dipped in it to spread jelly on wheat toast and then re-dipped in to get more jelly needed to be placed on a separate shelf where I no longer used it.  Even crumbs from the toaster or the cutting board at this point can make me sick or trigger more migraines (if that is the trigger).  I read somewhere early on that 1/48th of a teaspoon of gluten can damage a person with Celiac's small intestine.  So what that means to me is--I have been eating gluten for 33 years of my life....yikes...I can't afford any more damage.  

So job #1 was get all the food separated that had gluten, purge or donate what we weren't going to use anymore.


Job #2 was to cleanse all the cooking utensils like majorly cleanse them.  I'm talking like deep clean and then deep clean them again and then maybe a third or fourth time.  Thank goodness we have a stainless steel kitchen aid mixer and pots and pans that could be scrubbed to high heaven.

Job #3 Keep purging because you most definitely missed something.  Scan and rescan items to make sure there are not hidden trace elements of gluten.  This handy little app helped a lot "The Gluten Free Scanner."

Job #4 Pin every pin on Pinterest and text your Auntie GayLynn for all her best GF and Paleo recipes and start trying them immediately after returning from the store (and yes they are delicious). 

 Job #5 Go the the store and try not to have a panic attack while you shop for new GF items because #1 they cost a fortune and #2 you have no idea what to make.

And for a little comic relief I give you the bloopers 

 

Flying to Houston my head will explode....

Crazy Eyes!!! I can't see my eyes are dilated

At the ER the 3rd time eating chips apparently this is my face for everything....how attractive ;)

Think of it like a 1,000,000 piece jigsaw puzzle

It has been easy to get discouraged along the way because there has been so little that the doctors have been able to tell me.  The medications have done very little to help and I feel very sick.  But the kindness of friends and family who have gone over and above to support us and show love has been...there are no words to explain how grateful we are for each of you.  For weeks I have not been allowed to drive or work.  Even just a text or a quick link to a new recipe to try has been so encouraging that people have not forgotten about us.  I am a private person usually and this has been especially hard to share about.  I am only opening up now with the hope that more people can have compassion for what a new struggle we are finding ourselves in...
As we learn to accept it I hope our friends can be understanding with us as we are learning and processing it all too.

Here is what I know so far.

I have had 3 trips to the ER.  They have tried every migraine cocktail of drugs in the book and nothing has even touched the pain and nothing has broken the migraine.
2 MRI's--One cyst (more on that later)
1 PET Scan--No cancer--Thank the sweet baby Jesus
1 CT Angiogram--Results normal
1 Echo cardiogram--results still pending more on that later

I have seen specialists in Colorado and Houston, TX:
5 Neurologists
3 Neurosurgeons
1 Neuro-opthamologist
1 Opthmologist
1 OBGYN
1 Endocrinologist
1 Chiropractor
1 Accupuncturist
1 Internal Medicine doctor

For now the diagnosis is: Chronic Migraines, Celiacs Disease, Pineal Gland Cyst...

Still waiting for more appointments next week and more results to be processed.  Waiting to be seen by a headache specialist at University Hospital--Anyone have any amazing connections there?      

http://www.migraineresearchfoundation.org/fact-sheet.html

https://celiac.org/celiac-disease/what-is-celiac-disease/

http://rarediseases.org/rare-diseases/pineal-cysts-symptomatic/

Where to begin...

I'm not even close to where I started this journey and too much has transpired to even try to start back at the beginning so I am going to start right in the mess of the middle of it all.  I feel exposed even dipping my toes in the water and beginning to write anything down and at the same time I feel relieved to be able to have a place to write it all down and leave it all there.  I'm struggling to accept a new reality and yet at the same time I realize it could be so much worse and I should be thankful that it isn't so much worse at the moment.

Close your eyes and imagine for a moment that feeling you get after riding a spinney ride like the cheep carnival types that spin and spin and spin so fast that it pins you to the wall and then the floor drops out and you stick to the wall of the ride as it spins and spins and spins and you try to reach to the middle but your arms are sucked the middle.  Do you remember how you felt walking off the ride?  Your head a dizzy, foggy, blurred, vertigo topsy turvy feeling.  Where you can't walk in a straight line or tell if the room is spinning or if you are still spinning?

Then think of the worst hang over headache you ever had.  Like you had way too many tequila shots on an empty stomach followed by sugary sweet fruity drinks with your girl friends.  Had late night chili cheese fries.  Came home and vomited for hours.  Woke up and had a headache a nausea that you thought would never end.   But then add the worst migraine headache throbbing, pounding, tunnel vision, aching, pounding, light sensitive, unrelentless migraine pain to that.  

Then think of fatigue.  Fatigue like you have newborn twins who are teething and who are sleep training and who are up every two hours.  But you are tormented by the fact that you are so tired can not sleep enough to feel rested.  You seriously can not even keep your eyes open but you also can not sleep kind of tiredness.  Tiredness that makes you ache all over but is not satisfied by sleep.  Rest that does not quench your fatigue.  Fatigue that makes your legs twitch and your joints ache.

These words seem so empty in trying to describe the feelings that have held my life hostage since January 31, 2016.

What we have been up to lately...

We have been having a lot of fun!  We are totally ready for warm weather and being outside every day!  

Here we are playing at Grammy and pops. 

Giving our law mower and shopping cart a car wash. 

Water table fun! 

Trying out new parks! James is such a daring little monkey. He will climb up anything. Ellie loves to swing. 

James and Ellie earned a movie night with popcorn for filling up their sticker chart for going potty!! We love frozen!  

Going to the children's museum with our friends before I have to go to work.  I love that Jenni watches our kids in the afternoon and they have made such good friends with all the kiddos she takes care of.  I can't tell you how thankful I am for Jenni!  James and Ellie love her and her kids.  She is amazing and makes being a mom so much fun. 

Making giant messes is what James and Ellie do best. 

Nature walk at Paul Derda with friends. We learned about sink or float and made boats. We got to have special treats for kami's birthday. 

Playing on the lawnmower at the garden store. We have been doing lots of planting!  James and Ellie are good at digging holes and finding worms :)

Being silly 

Going for lots of walks 

Daddy's been working hard 

Riding the train and hanging out with mom and Grammy. 

Just a few more days until summer break!